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the view from here

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the view from here

Posted by Dan Gottlieb on Nov 29, 2010 11:47 am

The view from here

I will be posting here every week with some thoughts and experiences about a wide range of relevant topics from abilities to disabilities from life to death from joy to despair and from spirituality to spasms!

In short, this will become essentially a blog where you can pose questions, react to my entries or invite me to address something that is important to you.

see you on Tuesday!

Dan
 
Daniel Gottlieb PhD
www.DrDanGottlieb.com 
Dan http://www.DrDanGottlieb.com
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RE: the view from here

Posted by Dan Gottlieb on Nov 30, 2010 3:45 pm

Yesterday I left the house at 9 AM to go to WHYY FM where I host a radio show every Monday at noon. But my remote didn't open the van, nor did any of the internal buttons. A few minutes later we did all of that manually and I was behind the wheel ready to go. But after getting a couple of hundred yards from my house, something felt very wrong and I came home.

Anybody who has a wheelchair van knows what happens from here. Try to find a wheelchair van company that handles emergencies. Then try to negotiate with AAA to take the van without my being in the truck. Then try to rent a van quickly without taking a second mortgage on your house. And then sit not knowing when it will be fixed or even if it will be fixed.

I tell this story not because I am looking for pity, sympathy or even understanding. I tell this story because this is the nature of my life, our lives. But perhaps that's the nature of all of our lives. Things come out of nowhere. 99% of us became disabled or became caretakers by virtue of an event that came "out of nowhere". Woman wakes up in the morning and discovers a lump in her breast, or an unexpected layoff notice or a call from the school principal or a spouse that says they can't stay in this marriage anymore -- everything seems to come out of nowhere. Of course, when we fall in love or feel the first snowflake on our cheeks or see our child for the first time, those emotions come out of nowhere also
.
The question is not how do we avoid these predictable unexpected events, the question is how we cope with them. The American psychological Association just came out with their annual report on stress. No surprise that stress is worse. No surprise that women experience more stress than men and caretakers have it worse. But what might be a surprise is what stress actually is. Michael Baime M.D. is A colleague and friend of mine who is both a physician and a meditation researcher and teacher. He explains that stress is what happens when we fight against the moment we are in wishing it was a different moment (I immediately thought about a traffic jam).

I wrote on another post about how I recently was having very violent spasms. Every time they happened, I would suffer, become distressed and start telling myself stories about what they meant. I felt frightened, despair, self-pity -- but mostly fear of the future. After about 36 hours, I just gave up and gave in and allowed my body to do what it needed to do. I still suffered with the spasms, but I was no longer fighting with my body and I fell compassionate for myself and my body. Still felt pain and elevated blood pressure and difficulty breathing and all that goes with this stuff, but I didn't feel stress I felt kindness.

Michael and those meditation folks think this stuff is teachable. What do you think?

Dan

Daniel Gottlieb PhD
www.DrDanGottlieb.com 
 
Dan http://www.DrDanGottlieb.com
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RE: the view from here

Posted by Carla Steinbuchel on Dec 2, 2010 4:16 am

Hi, Dan!
You are right on target!  And thanks for mentioning your spasms.  Somehow, I thought they would go away at some point in time if I was doing everything right.  Those pesky expectations!  

I notice for myself that my best days are the ones that just unfold.  Perhaps this is part of the reason I struggle with scheduled activities.  I cannot tell you how many things I have missed because of the stress associated with getting ready and trying to be on time. When the unexpected happens, I feel stressed which, in turn, makes it harder to do what I need to leave on time.  

I have learned that those are the times that I have to just stop, take a few deep breaths, relax, and remind myself that the world will not stop if  I am late or less than perfect.  As you have mentioned over & over, in the big scheme of things, I am just not that important.  My goal is to keep making the attempt to show up within the context of a sometimes unruly body or, as in your case, a mechanical failure.  
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RE: the view from here

Posted by JLo on Dec 2, 2010 2:02 pm

Dr. Dan,

Great topic you started here. I think that as simplistic as it may sound, the words of Frank Sinatra come into my mind..."That's life." These unexpected occurances always pop up, and quite often at thee most inopportune times. I am not saying this is okay, but I am saying, sometimes it is easier just to be a realist and face that "that's life."

I remember reading in one of Christopher Reeve's books where he wrote about scientology. When something happens, bad energy, bad vibes, you recognize it is there, but don't dwell on it. Sometimes, most times I am learning, it is easier to just not fight it. Similar to what you wrote Dr. Dan, you gave in and allowed your body to do what it had to. You have a headache or a cold, a bad morning where everything goes wrong, your oven breaks.. it's not fun, but "that's life."

Thanks for the insight Dr. Dan!
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RE: the view from here

Posted by on Dec 7, 2010 2:49 pm


†indeed, By God, worrying doesn't get anyone too far, frustration'll just waste energy, even The Bible Tells us as much (ref. mt.6, thanks be to GOD) 'sufficient for today are the troubles of it's own' and 'who can add a single day to his life by worrying?' (iirc)

believing in God and the capable 'self' God Created you as really helps, as paul says in phil.4 (thanks be to GOD) that i/we/he, etc. 'can do all[many] things in The LORD GOD who strengthens us'....relaxation can be 'learned', even if it's not always 'easy' to acclamate too for some of us! and having peace and prayer and fellowship through Christianity and such helps with that!

PLGB y'all n thanks be to GOD
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RE: the view from here

Posted by Bob on Dec 7, 2010 3:01 pm

Thanks for the post.  Very relevant to me.  In addition to being a spinal cord injury survivor,(C5 incomplete) I am also a caregiver.   I have a 30 year old chronically ill daughter who suffers from CIDP, which is peripheral neuropathy.  We spent last Wednesday night in the emergency room with her suffering extreme abdominal pain.  I remember praying and wishing hard that the moment would change and that we could be somewhere else.  I was so afraid that she would require surgery, which for her is very dangerous because of her compromised immune system.  The stress was overwhelming, rendering me almost physically unable to move.  I'm not sure how to cope with that kind of fear and stress.  To "go with the moment" and not fight it would seem impossible.   Any suggestions?  
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RE: the view from here

Posted by Dan Gottlieb on Dec 7, 2010 3:31 pm

Harvard psychologist Daniel Gilbert says that most important decisions are about trying to make our future selves happy. Well, most of our suffering is about thinking about the future, one way or the other.
Believe it or not, I have two friends whose children are dying of cancer. Upon hearing of their son's brain cancer, this one couple knew there days were numbered and opened up their hearts more than they ever had before. Despite the fact that they had been disappointed in some of the things he did, they stopped all of their expectations and their only wish was to be able to love their son one more day.

My other friend lives on the West Coast and his daughter has stage IV breast cancer. All he can think about is his terror about losing her and he is understandably bereft. But he becomes so agitated and tearful when he visits her, that she asked him not to visit anymore. Heartbreaking.

Both of these people are thinking about the future, but in very different ways. Both feel unimaginable anguish but one is fighting against their life and the other is living with their lives.

I had a dream last year that I was in a subway and the angel of death appeared and pointed a finger directly at me and said "January", and then I woke up. If that dream is true, you won't hear me complaining about the cold weather we are having in the East because it could be my last. I am taking more joy just looking out a window than I ever did before. Gratitude comes more easily. And yet, if it is next month, there's great sadness and some anxiety.

I sure hope he meant January 2040. But I also hope I live my life as though it is next month.  
Dan http://www.DrDanGottlieb.com
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RE: the view from here

Posted by Cari Ann on Dec 7, 2010 6:46 pm

Dear Dr Dan,

Please know that your dream is not literal.  IF your dream is to come to fruition it will more likely be in the form of some kind of change, not literal death. No matter how sinister you felt the messenger, it still doesn't have to be a negative thing.  Perhaps its your inner self telling you to be more cautious of your sourroundings,  activities, your health.  That is exactly what you were doing when you turned your van around and went back home.  You followed your gut.  You don't know if you avoided any bad circumstance (physically, emotionally, professionally,) but I'm sure you felt a sigh of relief, at peace, when you hit your driveway.  THAT was worth the turn around.

I get concerned when I dream of people I know.  Some dreams have come to pass, but NEVER in what would be considered its literal interpretation.  Any dream that had any sense of dire turned out to be an issue that they (and I possibly) had to deal with-medical, emotional, financial, career related. 

It sounds like this creature seemed somewhat evil, or ominous to you.  I do not know what your belief system is, but if you believe that this creature had evil intent, then you should also believe in good and the power of good vs evil.  I don't know how to speak to the various religious beliefs, as I was raised a Catholic, a Christian and can only reference the protection I truly feel when I repeat over and over, "By the power of Jesus, be gone."

"I" would visualize that messanger and defiently and confidently repeat that saying over and over until I saw him cower and run away.  You are more powerful than your dream and I don't sense that you are going anywhere in January but working hard at helping people through this web-site. 

Now, I didn't miss your point about how we could handle stress.  I will pray for your friends and I do believe in miracles.

Look forward to hearing from you in February 2011, Cari Ann
Dan Gottlieb says:
Harvard psychologist Daniel Gilbert says that most important decisions are about trying to make our future selves happy. Well, most of our suffering is about thinking about the future, one way or the other.
Believe it or not, I have two friends whose children are dying of cancer. Upon hearing of their son's brain cancer, this one couple knew there days were numbered and opened up their hearts more than they ever had before. Despite the fact that they had been disappointed in some of the things he did, they stopped all of their expectations and their only wish was to be able to love their son one more day.

My other friend lives on the West Coast and his daughter has stage IV breast cancer. All he can think about is his terror about losing her and he is understandably bereft. But he becomes so agitated and tearful when he visits her, that she asked him not to visit anymore. Heartbreaking.

Both of these people are thinking about the future, but in very different ways. Both feel unimaginable anguish but one is fighting against their life and the other is living with their lives.

I had a dream last year that I was in a subway and the angel of death appeared and pointed a finger directly at me and said "January", and then I woke up. If that dream is true, you won't hear me complaining about the cold weather we are having in the East because it could be my last. I am taking more joy just looking out a window than I ever did before. Gratitude comes more easily. And yet, if it is next month, there's great sadness and some anxiety.

I sure hope he meant January 2040. But I also hope I live my life as though it is next month.  
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RE: the view from here

Posted by Dan Gottlieb on Dec 14, 2010 10:16 am

Monday is the 31st anniversary of my accident. Someone asked if I had a certain ritual I went through each December 20th. Not really, it's just a very private and personal experience that day.

It used to be in anguish as I grieved all over again about what I lost and spent some of the day in self-pity. After a few years, I realized that it didn't feel very good! So then I took the day off and try to do something wonderful. That helped a great deal.

But as I age, this feels a bit different. I do look back but it is more wistful than painful. When I look forward, I don't see a very pretty picture. But when I look outside my window and then I look at the pictures on my desk, I see nothing but exquisite beauty.

The anniversary of my accident is a time to remember and reflect. And it is a time to spend the day with a person I have grown quite fond of over the years -- the only one on this planet who really understands what my life feels like and respond with compassion. Who is that person? Me.
Dan http://www.DrDanGottlieb.com
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RE: the view from here

Posted by Elisha on Dec 14, 2010 6:36 pm


When  February 12th come around, the day I was stuck by a car resulting in a closed head injury leaving me with multipal disabilities, I reflect on how far I've come and how much further it is to go.  I used to have my head bent over.  NOT NO MORE!  Well let's just say that there are lots of things I have improoved upon.  For instance the dr.s didn't think I'd come this far!  They said just put her in a nursing home.  My parents put me in rehab.  That was many years ago.
     Now this year will be the 25th anaversery of my accident.  I stoped going over the details of my TBI every day.  I talk about it though when people ask what happened?  I feel it is my duty to educate the public and encourage street safety.
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RE: the view from here

Posted by Jim04435 on Dec 14, 2010 7:44 pm

I seldom think of that event. Usually I just get on with my life.
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RE: the view from here

Posted by Deborah Lynn on Dec 15, 2010 1:29 pm


Happy Happy Anniversary. I'm so thankful you survived and are here to share with us. Congratulations...Blessings & best wishes during your next 31 years.

October 11th is my anniversary date. i just completed 6 years. 46 year old RN getting into car to go to work, Anchorage, Alaska 7:38am, pitch black outside. stabbed 10 times, attempted murder, hit C4-C5, hemi-plegic...WHAT DO I DO ON MY ANNIVERSARY?

My therapist in Alaska warned me, "Make sure you are not alone on your anniversary date." So, every year, instead of sitting at home remembering the nightmares, flashbacks, pain and losses, i have a, "Celebration of Life Gathering." Live music, food, fun, friends, bonfire, etc. I was given another opportunity to live...i celebrate.
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RE: the view from here

Posted by paris 85 on Dec 15, 2010 9:57 pm

Our anniversary was Nov 17th, two years post paralysis. We have come a long way my husband and I.

All the experts told us two years is basically it. Well, I guess this is it! Life as we know it today is living with paralysis and what this new norm means to us.

I am happy to say we have adjusted. We have accepted this new environment. No choice, we have no control of it.

My husband was always a pragmatic. I,  on the other hand was always the dreamer.
I had many ambitions and goals for our golden years. They somehow have changed now. I don't expect anything anymore. I have learned to live the moment as if there is no tomorrow. In many ways this is very liberating, it is also sad.. Maybe I am muted, jaded, I am not sure.

But, I am sure of one thing, today was a gift and I cherished it to the max.

Thank you God for your mercy!
 

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RE: the view from here

Posted by Deborah Lynn on Dec 15, 2010 11:12 pm

hello, what is the two year thing? i never heard of it before.

i'm post six years and still regaining & recovering. left hand just this year, can find some things without looking.

congratulations on two years & best wishes in the future. blessings, deborah
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RE: the view from here

Posted by deanna_1789061 on Dec 16, 2010 10:39 am

My anniversary is Oct 16, 28 yrs T4-T5 SCI incomplete walking with a terrible gait, but walking; I used to be sad and reflective on my anniversary except this year I looked back to where i was last year(recovering from a major foot surgery) and i thought to myself..."i'm so much better this year than last" & for the FIRST time ever i gave thanks this past anniversary.  Its hard to be positive everyday - to ignore the stares of people and to try to live your life normal....
So my new thought process is to be thankful for what i do have instead of being sad for what i have lost, i have gained strength, stubborness, and an overwhelming desire to succeed, would that have happened if i hadn't been shot @ age 14? Who knows.
Deanna
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RE: the view from here

Posted by paris 85 on Dec 16, 2010 10:52 pm

Hi deborah...

I am not sure how to take your congratulations.

Two years is only the beginning of coping with anxiety, anguish, anger and the self pity. But, we decided it was time to accept life as we know it. It helps for now.

I am glad that you have had recovery after six years, this gives me hope for my husband, frankly for us! We have being married 25 years. When I speak of paralysis, it often seems I am the one going through it; this is  only because in many ways we are one! A life time together does this...

I sure hope my husband regains and recovers as you have. The so call experts he has encountered have being mediocre to say the least. As his wife and only caregiver, I always worry if something happens to me, who will he have to make sure his needs are a priority?

I know it might sound silly but, these are the things I try not so think about., I rather live today and cherish our marriage as is, and I don’t want to plan for tomorrow. Tomorrow scares me.

Secretly I will tell you, I do hope tomorrow brings joy.
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RE: the view from here

Posted by Joe_1755466 on Dec 21, 2010 10:31 am

I was injured in 1984, but the date is now one of the most famous, if not the most infmaous dates in American history, September 11th.  September 11th, 1984 was the day I broke my neck playing football, and was paraylzed from the neck down.  Two days later my Dr. at that time informed me that my spinal cord was severely bruised and crimped through the c4-c5 region.  Because of the nature of the bruise and crimping of the cord, I was told walking was not a very likely option and to be prepared to use a wheel-chair for the rest of my life.  Not the news a young aspiring professional baseball player wanted to hear.  Fortunately for me, 5 days later my left leg slightly moved.  As a result, the diagnosis eventually changed to a Central Cord Syndrome.  Basically the majority of your paralysis remains in your upper extremities.  See my post "Red Head Step Child of Spinal Cord Injuries."  That will give you a really good idea of how I feel about my injury.
But this post is about the date and what I do when it comes around.  Well for 17 years it had been MY day!  My day to reflect, mourn, grieve, and to ponder life's big questions.  For many years it was a day for me to be angry, ok angerier than the other 364 days.  But eventually it turned into a day for me to be grateful.  Grateful that I was still alive, grateful that I could still do so many of the things I love, even if it meant doing them with a disability.  Yes 9/11 was a day that I would think about my life, and just how precious it really is.  Then 9/11/2001 happened, and my day became our Countries day.  I think maybe that after 10 years people will not just think about the atrocities of that day, but will ultimately learn to think as I have about 9/11; Life is short, life is not garaunteed tomorrow, life can change in the blink of an eye.  In my presentations, I am a professional speaker www.joerhea.com I often encourage people to use September 11th as I do.  Because not only did my life change that day, but all of our lives changed. 

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RE: the view from here

Posted by Dan Gottlieb on Dec 21, 2010 3:10 pm


so many beautiful posts about our anniversaries and what they mean to us. A Sufi once said "when the heart weeps for what it's lost, the soul rejoices for what it's found."
And that's what I see as people describe the changing meaning of their anniversary dates as they go from grief and self-pity to sadness and regret to gratitude.

my anniversary was very different than previous years. And very unexpected.

I woke up Sunday morning, the day before the anniversary, and the first thought that went through my mind was about a Wednesday morning December 19, 1979 -- the day before my accident.

I wondered "what if I knew this would be the last day I would be able to walk or wrestle with my children?" I'll bet the ground would have felt different under my feet, I would have been sure to feel the pressures touch of my daughters skin on my face. I'll bet I wouldn't have complained about the cold could have enjoyed my ability to be out there. I would have made love to my wife and savored every moment
.
And then I thought that I would like to live that way every day for the rest of my life. And so my day began and I was fully awake and alive, filled with gratitude for everything around me that I may not have noticed yesterday. It was a wonderful feeling.

And then at 1 PM, my buddies arrived and we watched our beloved Eagles humiliate the dreaded Giants! I might not have been fully awake and alert for those three hours, but I had a damn good time!
Dan http://www.DrDanGottlieb.com
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RE: the view from here

Posted by Shel on Dec 21, 2010 7:45 pm


Thinking about the future as a paraplegic in a wheelchair terrifies me, even though I have been injured for nearly 6 years.  I was cycling for fitness when I was injured with a freak fall over the handlebars while avoiding an oncoming truck.  I was wearing a helmet and landed on my head, but the impact "burst" my T-5 vertebrae, resulting in a complete SCI.  Physical activity was very important to me (I had completed a marathon, a number of sprint triathlons, endurance bike rides, and 10k to half marathon races), I had just retired after 30 years of working, and I was looking forward to traveling and High Sierra hiking with  my two nearly adult children.  All of that went away in a second.  I try to participate and to appreciate what I still have, but it is hard.  I experience constant neuropathic pain.  The bowel program routinely takes 1 to 2 hours every day.  I sleep very poorly.  My husband resents being put in the position of caretaker.  And, as a 61 year old female, I do not have the upper body strength of the mostly male SCI population.  I try to maintain some hope for my future, but have not been able to accept and be content with my condition.  Sometimes I am still terribly depressed, while others I am more philosophyical about it.  I know we cannot control everything that happens in life.  IAll I was trying to do was to remain fit so I would age well and with independence.  That is not going to happen.)  I am wishing for a medical miracle, but realisticly think it is probably too late for me. Most of the time I really don't know what to do.  All my doctors like me, and wish they could do something for me.  I wish so too.

Shel
San Luis Obispo, CA
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RE: the view from here

Posted by Joseph Groh on Dec 22, 2010 12:36 pm

Shel,

I thought I was the only one who was paralyzed because of a freak bicycle accident.  The great thing about this website is that you can find people here who truly understand what you're going through.  Like you, I tried to stay in shape through regular and rigorous workouts, although no triathlons.  3 years ago I was riding hard on a bike trail when I encountered sand, causing my bike to slide off the trail.  I was thrown over the handlebars and injured my C-4 vertebrae, resulting in a complete SCI.  I have no movement below my shoulders and I don't expect that will ever improve.  I am 56 years old, and the retirement life I once envisioned is not going to happen.

Regardless of all that, I am thankful for the support of my wife and children.  At the time of my accident, my middle son was attending college on a football scholarship.  Without prompting from me in any way, he made the decision to leave the dream life he had created for himself and move home to help take care of me.  He finished college and the best gift I could ever give him is to find a way not to impinge on his future life.  We feel that way about all our children, our youngest recently left for college out of state on a basketball scholarship.  While extremely difficult to see them go, the best thing I have found to avoid depression is to focus outward and away from my situation.  I have since engaged in volunteer work for a number of organizations, started a foundation which seeks to help those in the construction industry experiencing life altering injury/illness, helped my daughter sort through college scholarship opportunities, helped my son find employment following graduation, manage and direct the changing landscape in our insurance coverage and oversaw construction of a home better suited to our current needs.  I have kept busy with these activities and plan to continue as long as I possibly can.

I think one of the best things you can do for your situation is to find something that challenges you mentally, and to the extent you can, physically in a way that requires you to look outward.  I try to look at what I still have physically/mentally and not what I have lost.  It's not easy, and I don't like the hand I've been dealt, but I vowed early on to never look back, never give up and remain positive.  Like before, I only have one life to live so I might as well try to make it the best one I can, not only for myself but for those who I might come into contact with.  I wish you all the best, and hope you find some peace during this Christmas season.

Joe G.
Shel says:

Thinking about the future as a paraplegic in a wheelchair terrifies me, even though I have been injured for nearly 6 years.  I was cycling for fitness when I was injured with a freak fall over the handlebars while avoiding an oncoming truck.  I was wearing a helmet and landed on my head, but the impact "burst" my T-5 vertebrae, resulting in a complete SCI.  Physical activity was very important to me (I had completed a marathon, a number of sprint triathlons, endurance bike rides, and 10k to half marathon races), I had just retired after 30 years of working, and I was looking forward to traveling and High Sierra hiking with  my two nearly adult children.  All of that went away in a second.  I try to participate and to appreciate what I still have, but it is hard.  I experience constant neuropathic pain.  The bowel program routinely takes 1 to 2 hours every day.  I sleep very poorly.  My husband resents being put in the position of caretaker.  And, as a 61 year old female, I do not have the upper body strength of the mostly male SCI population.  I try to maintain some hope for my future, but have not been able to accept and be content with my condition.  Sometimes I am still terribly depressed, while others I am more philosophyical about it.  I know we cannot control everything that happens in life.  IAll I was trying to do was to remain fit so I would age well and with independence.  That is not going to happen.)  I am wishing for a medical miracle, but realisticly think it is probably too late for me. Most of the time I really don't know what to do.  All my doctors like me, and wish they could do something for me.  I wish so too.

Shel
San Luis Obispo, CA
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RE: the view from here

Posted by Dan Gottlieb on Dec 28, 2010 2:06 pm


Hi Shel,

Thanks so much for posting. If we were together in my office, I would want to spend all of our time together talking about the first sentence of your post "thinking about the future as a paraplegic terrifies me." I would want to understand that terror and create an environment where you feel safe enough to let yourself feel all of that terror. You see, if you were able to simply feel that terror, perhaps you could think about your future as a paraplegic.

I have said on these pages before that all of the great lessons I have learned in my life have started with the words: "holy s**t, this is terrible and it will not change! Now what?" And it is the second sentence that changes everything. If I am going to live with this, how will I do it? How will I tolerate the fear and embarrassment when I put myself out in public? How can I tolerate the overwhelming sadness I feel (for the first year I was afraid to cry thinking that if I started, I would never stop.)

The advice Joe gave you was wonderful. Reaching out to be of service to others is healing and the path to mental health is through the pursuit of social health. But the timing is everything. First, tolerate your temper and think about a future. Not just the future you fear, but the future and you can envision when you no longer fear

Dan

Daniel Gottlieb PhD
www.DrDanGottlieb.com
Dan http://www.DrDanGottlieb.com
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RE: the view from here

Posted by zuzu on Jan 5, 2011 8:25 am

Shel, I wish there was a way for you to be in contact with my Mom in Petaluma. She's a C3,4,5 incomplete quad as a result of a fall 8 years ago at the age of 71.  She had been an avid walker, and my parents had travelled constantly in the US and abroad.  They were really enjoying retirement.  While they were visiting my sister in Boulder CO she fell off a bed and hit her neck on a dresser.  She still blames herself for the accident and changing their lives forever.  She believes she's going to be the cause of making them "destitute".  She's angry that she's stuck in a body that's "like this".  Neither one of my parents has realistically embraced her life as a quad, so they have done little modification to their home to adjust to her needs.  Dad is NOT a caregiving kind of guy and I'm frankly surprised that he has stuck with it this long.  They did have longterm care insurance which helped with in-home care for about 4 years and they've had their own funds that are so far covering in-home care now.  But that means that Dad is still responsible, at the age of 79, of doing the nighttime care, some afternoon care, evening meals, some weekend care, and he's not coping well.  She's not either.  They have refused counseling, support groups.  Same issues with the bowel program, and with flushing her catheter at night and he gets irritated by her frequent UTIs and visits to the ER.  They've isolated themselves from most of their friends.  Mom won't go out of her home unless it's for a doctor visit, at all.  She has refused to use audio books (she was an avid reader), voice activated devices (except for speaker phone that she can't hang up on her own), or the newest in her collection the IPad.  She only sits all day watching one of her many clocks waiting for 15 minutes to pass so she can tilt back for 60 seconds then sit up again; asking people to put her "blanket up, blanket down" and reset the thermostat one degree; or watching re reruns of Law and Order.  

It rips my soul.  I lost my Mom the day of her accident, August 24, 2002.  I miss her.  I can't have a private conversation with her, can't send her mail that she can read in private, can't send her email that she sees in private, all because she refuses to learn how to use devices that allow her communicate despite the limitations of her SCI.  Visits with her become more difficult because of cost and my health, I live in NC and am disabled myself, and the tone in their home.  She and Dad are becoming more impatient with each other, and with others.

Shel, find your passion.  God gave you this part of life for some grand and amazing reason.  I can see in my Mom's injury that He made her home a place where young women from Kenya would come to work who needed a safe, honest and positive environment to learn about our culture so they could survive here during their first few years and become mature, savvy students who were ready to move on to better things than cleaning her butt.  We've been blessed with some amazing, loving, respectful caregivers who have treated my Mom with great dignity, and have embraced our family as their own; and we've been able to teach them about people who would try to take advantage of their trust, and learn how to communicate with people here a little better (so that when a person say "Get out" they shouldn't leave the room!). And each woman, after a few years gets to move on to further their education, knowing that we expect them to have better things in their lives than dressing Mom, feeding her, washing dishes and picking up after Dad.

You still have the ability to type.  Communicate with people.  Just start about anything, like this. Keep the dialogue going.  You'll find a place where you fit, but you have to expose yourself to the world and not sequester yourself inside your home.  My disability kept me home, changed my life plans, BUT I'm the one who was at home to help our NC niece get safely to my parents care in CA when she was stranded during her first business trip on Sept. 11, 2001; and I'm the one who was at home when the nieces call to discuss tragedy in their personal lives; and I'm the one that so many other friends call to talk about their MS, Fibromyalgia, Arthritis, Alzheimer's and dementia caregiving, Migraine headaches; I'm the one that the neighbors call to feed the cats and dogs when they are away or to talk to when they have a death in the family, a personal loss, a separation, divorce, a child in trouble, financial problems - because I'm here and have time and they know I'll listen and in most cases I PERSONALLY KNOW what they are going through and I care.  They know that I'll research answers to their questions if I don't already know them and I'll direct them to the help they need.  

You could have a great ability to do that with your background and knowledge in physical fitness and exercise.  You don't have the upper body strength the men do, but you could work on keeping the strength you have (don't listen to that health insurance therapy garbage that "if you're not making progress" they won't pay, check with the local Junior/Community College and see if they have an "adaptive physical education" class which is usually very low cost or a sliding fee and tailored for your physical situation and would be an ongoing class based on your needs); find out if there is a local Community Resources for Independence agency and talk to someone there to join a group that does adaptive sports, 61 is NOT old and you can show them that old women are tough women!; share your knowledge about marathons and running as a coach on a high school team or by mentoring young women who want to train for marathons; you may still get up to the High Sierras by using one of the specially adapted bikes for paraplegics that is propelled with your arms, or it may become a trip that enlists the help of your husband and kids to get in the remote places.

You're right, the "Cure" probably isn't going to help you or Mom.  And your life now isn't what you had expected or wanted.  In fact it sucks.  When you and your husband married your life changed from being a single woman to one of a couple, and you both adjusted.  When your first child was born your lives as a couple changed dramatically, and you both adjusted.  When you retired and your kids were moving on with their lives, you both were having to adjust as a couple.  Your SCI is another adjustment that you both must make as a couple.  It is a life changing event, but you can both adjust, you just may need some help with the changes.  

I swear that peer support groups help lots.  Being able to talk to someone else who can look you in the eye and say "I know" and you know they really do makes a huge difference.  Your husband could go to any caregiver support group in the area, because a caregiver is a caregiver, whatever the medical situation (I say this from the experience of helping care for my mother-in-law who had Alzheimer's and gradually becoming the leader of the support group I was attending, from helping with Mom and from seeing Dad care for her).  The worst thing that could happen from trying individual counseling or groups is after six months it doesn't work for you.

You live in a state with some of the best options for treatment, best laws for accommodations, most advanced thinking in terms of social issues.  Consider using that to your advantage, Shel, and know that if you open your mind to it, somewhere out there is a special idea, person, project just waiting for you to find it and take it on as your new marathon.

Deborah
Greensboro, NC
Shel says:

Thinking about the future as a paraplegic in a wheelchair terrifies me, even though I have been injured for nearly 6 years.  I was cycling for fitness when I was injured with a freak fall over the handlebars while avoiding an oncoming truck.  I was wearing a helmet and landed on my head, but the impact "burst" my T-5 vertebrae, resulting in a complete SCI.  Physical activity was very important to me (I had completed a marathon, a number of sprint triathlons, endurance bike rides, and 10k to half marathon races), I had just retired after 30 years of working, and I was looking forward to traveling and High Sierra hiking with  my two nearly adult children.  All of that went away in a second.  I try to participate and to appreciate what I still have, but it is hard.  I experience constant neuropathic pain.  The bowel program routinely takes 1 to 2 hours every day.  I sleep very poorly.  My husband resents being put in the position of caretaker.  And, as a 61 year old female, I do not have the upper body strength of the mostly male SCI population.  I try to maintain some hope for my future, but have not been able to accept and be content with my condition.  Sometimes I am still terribly depressed, while others I am more philosophyical about it.  I know we cannot control everything that happens in life.  IAll I was trying to do was to remain fit so I would age well and with independence.  That is not going to happen.)  I am wishing for a medical miracle, but realisticly think it is probably too late for me. Most of the time I really don't know what to do.  All my doctors like me, and wish they could do something for me.  I wish so too.

Shel
San Luis Obispo, CA
  • Posts: 47
  • Joined: 07/14/10

RE: the view from here

Posted by Dan Gottlieb on Jan 11, 2011 4:40 pm


First to you Deborah, I am so terribly sorry to hear about what you are going through with your parents. My parents went through something similar (although there was no spinal cord injury) but their lives got smaller and smaller and my father was a reluctant caretaker. When ever I visited them I left feeling empty because the two of them spent the bulk of the day watching television in separate rooms. And with all of my skills and resources, I wasn't able to do a damn thing. The strange thing was that when my mother died in 1998, my father grieved terribly and was filled with regret. And today is the 10th anniversary of his death. So very sad to watch people we love suffer so much right before our eyes.

And to you Shel, In a way, Deborah might have been asking you to live your life because she suffers so much watching her parents not live theirs. For the first 10 years after my accident, I was afraid of my body feeling it was a terrorist. Then I hated my body because of the demands it may and how it prevented me from living the life I wanted. And after 30 years, I am so very grateful to this body for working so hard for me. Things change when we open up and allow ourselves to experience our lives. I was an avid golfer before my accident and giving up my golf clubs was excruciating. For a long time I would alter my driving route so I didn't have to drive past a golf course as it was too painful. And then the first time I drove past one I couldn't look. And when I finally did look, I cried. That happened several times.
I wrote a chapter in "letters to Sam" about how Sam became a golfer when he was just four years old and one day he invited me to join him on the golf course. That neither thinking of myself for my history I immediately said yes as I couldn't wait to see my precious grandson play golf. When I got there, I had forgotten how beautiful golf course is, how the air smells so fresh and how inviting those beautiful sand traps are!

It's so very painful and difficult to open up to the lives we have rather than feeling resentful for the lives we lost or fearful for the lives we envision. But when we open up to the lives we have, things become easier. Nothing really changes except for the way we experience ourselves

Daniel Gottlieb Ph.D.
DrDanGottlieb@aol.com
www.DrDanGottlieb.com
.
Dan http://www.DrDanGottlieb.com
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  • Joined: 07/20/10

RE: the view from here

Posted by Bob on Jan 18, 2011 2:40 pm

Just read your story.  Tragic!  You are remarkable in your approach to life.  I wish you the best and  many more anniversaries. 
  • Posts: 47
  • Joined: 07/14/10

RE: the view from here

Posted by Dan Gottlieb on Jan 18, 2011 3:27 pm


My radio show this Monday at noon is on "the Language of Pain" (voices in the family -- WHYY.org/voices or 90.9 FM in the Delaware Valley). But we will expand the concept of pain to include psychological pain, the pain all of us have endured and most still live with.
The pain of living with all of our losses, becoming dependent, the pain of losing dreams or for caregivers, the pain of losing a relationship the way it once was. All of this pain, like the pain of depression, is a form of chronic pain. And nothing isolates us more than this kind of pain. And we all know that isolation makes pain worse.
That's why we connect on these pages with kindred spirits; a place to find words for our lives and a place where we will be understood. It's very difficult to find "language of pain", but without it we become even more isolated.

And nothing heals pain more than compassion, kindred spirits and community.

So do you consider yourselves living with chronic pain? If so, what is your language of pain and how do you live with it?

Dan
Daniel Gottlieb PhD
Dan http://www.DrDanGottlieb.com
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